Wednesday, October 31, 2012

BD always closes out Down Syndrome Awareness Month around here. I look forward to reading what he has to say. And not just because he makes me sound way more awesome than I really am. He's a great father. Truly.Enjoy. And thank you for sticking around and hopefully learning something new this October.

=====

Since March our lives have been crazy at best. Somebody was pregnant and approaching the due
date, which sent us through a very spread out range of emotions, experiences,
dos and don’ts based on our experience with pregnancy and the birth of
Playette.

I was basically set to travel in and out of the area
multiple times at random in support of
“the greater good”, and Playette was just trying to hang out with her
sleepy momma and always on the road daddy.

Then things got interesting. In April, Baby took his sweet time joining us and our
time table was suddenly compressed. We
realized we wouldn’t be living in the area much longer and needed to start
looking seriously at where we were going to live and put Playette in
Kindergarten. Here comes the stress in
massive droves!

I was a ghost in the house for all of May, that’s right, a
newborn, a demanding energy bunny almost 5 year old alone in the house with
momma for pretty much the entire month.
We did have a few folks come help out here and there, but it was still a
tough time. At least I was reachable via
phone/email 24/7. In June I was gone for
2 weeks and I wasn’t available. I was
working some long days and the momma was at home working LONG days and LONG
nights.

July was easy, I was home and had some time off, oh wait, we
had to pack up the non-sleeping newborn and the now 5 year old (I missed her
birthday while I was away) and head out of town to look for a place to live, go
to a conference (great conference) and
finalize a place to live…awesome, as in ants in the hotel beds, long car rides
and little success in finding choices in a place to live. We finally settled on a place, queue the
movers, couldn’t let that slide into August.

So we (they) moved in August and after a weekend of
unpacking (we are almost done now) I made the first of many commutes back to the city of my job, because my old job doesn’t end until November (yet another awesome
stressful hookup). So I became a
fulltime weekend dad, arriving home Friday evenings and departing early Monday
mornings in order to support “the greater good” and be with the family as much
as possible.

September seemed to fly by as we got into a routine, and
then October smacked us in the face. I
had to be gone – gone til the end of the month.
That was rough. We were all very
tired, my job was wearing me thin, Playette was definitely showing out at home
and in school, momma was drained, and the now 6 month old still refused to
sleep through the night.

None of us were doing well be it on the home front or out on
the high seas, but we pushed through it and last Friday, after some prodding and
negotiating at work, I was able to walk through the door into the house I really haven't lived in yet and finally be home for good.

It was the best feeling ever, to know I was home that we
didn’t have any ridiculous moves or major life altering shifts coming in the
next couple of years was like taking a giant weight off all our shoulders. We have time to just be a family, which is
something we haven’t been able to do in the last 7 months. No negotiating living arrangements no
fighting with Malea’s school (fingers crossed), no disappearing daddy during
the week or for a random month. Now if
we can get the little one to sleep during the decent hours of the night we will
be cooking with gas!

It’s great to be back.
The things my family dealt with the past 7 months were very difficult,
but have made us stronger and gives us an appreciation for the times we get to
spend together, not stressing over the next steps. And finally, as you all know, the fact my
awesome wife held it down while I was all over the place given the situation is
amazing and not something that many can do.
That’s what makes her special and is one of the many reasons I love her
so much.

Monday, October 29, 2012

Sunday, October 28, 2012

1. BD thanked me this evening for my social event planning. We had plenty of food, drinks, and entertainment on Friday night for our neighborhood's Oktoberfest. Saturday, we spent the afternoon with families from a Ds support group about an hour away. And then this evening, we were invited to a Halloween party for the kids at a new friend's church. A very nice weekend to restart as a family of four.

2. It's probably good that we got out if all these storm rumors are true and we get stuck in the house for several days with no entertainment.

3. They've already canceled school tomorrow. No bueno.

4. Dez is determined to make a fool of me and is doing the exact opposite of what he was doing while BD was away regarding his sleep habits. It's horrible. And stressing me out. We had made so much progress and now? Back to square one.

5. I'm actually excited about Halloween this year. It better not get washed out.

6. Robyn, I couldn't email you to ask about that book, so I hope you're reading this. Is it just that one that you really like? Should/must I read the entire series or does it stand well alone? Either way is fine. I'm just curious.

7. Even when there is no screaming, I still hear screaming. But right now, it's really screaming. I know that for a fact.

8. What does this little boy have against me? I love him so.

9. This is making my stomach hurt.

10. If anyone's looking to party all night with a six-month-old, c'mon over. Bring candles.

Am I the last person to know about it? That's totally possible. It came out earlier this year and I've been a bit...busy this year.

It's classified at Young Adult Fiction, so it's a fast read.

It was brought to my attention by a fellow mother of a child with Ds.

Have any of you read it?

Interested?

I had been planning to go to a discussion about it tonight, but I couldn't quite work out the logistics.But I really want to talk about it.

The themes so closely tie in to what I sometimes feel and, well, wonder, being my daughter's mother.

That's one perspective I would have loved to see (the book tells the story through the eyes of multiple characters): the parents. Did they see their son differently, truly? What were their fears? What were their dreams for him?

If anyone has any other recommendations for me, please share. I'm itching for some new, enlightening reading material now.

Thursday, October 25, 2012

I had to go to an IEP meeting yesterday. As usual, I was nervous. I'm so used to fighting for what I feel Playette deserves and having her treated like a diagnosis as opposed to an individual. It's a shame, but true.

I'm always waiting for the other shoe to drop. Even now, when things seem to be going well.

When are they going to turn on me? This time? It's gotta be this time, right?

Well, if they're holding out, they've done it again, because this experience remains in line with those previous. We seem to finally have a team that is (gasp!) knowledgeable and logical.

My biggest issue going in this time was the changing of Playette's educational disability label. They had proposed (in the paperwork I received a week in advance!) that it change from Developmental Delay (DD) to Intellectual Disability (ID).

In a nutshell, I didn't agree.

So I fretted. And I asked for help from people I knew. And then I asked for help from people I didn't know.

And you wanna know what happened in that meeting?

Near the end, the Assistant Principal looks at me and says something like, "Regarding her label, yes, she does qualify for ID, but we'd like to take more time to get to know her and make an informed decision later. Maybe at the end of her first grade year? Would that be alright with you, Mrs. Smith?"

Mrs. Smith had to pick up her jaw off the floor.

Add in that other things I was going to request, they had already implemented and I was one stunned happy lady coming out of there.

We meet again in a couple of weeks to finalize the IEP.

My biggest problem now is that I'm not going to want to leave at the end of the two-year stint. The clock is already ticking. Loudly.

But I'll do my best to focus on the here and now.

My girl is finally being treated like she deserves and I've never wanted anything but just that.

Monday, October 22, 2012

I admit that I'm kinda obsessed. I've been forcing myself to have the composition journal be the very last thing I take out of her backpack on the days she's quizzed. I want so badly to know how we she did! But I know I need to take a pause so that she doesn't see how crazed I am.

Rainbow Words are sight words. Here's the letter that explains how it works:

This is what they look like:

Today, she came home with the blue words.

[Insert happy dancing mama who needs a new hobby here.]

Because I learned long ago from my Guru how kids with Ds do best with learning sight words, I redo the cards like this:

All lowercase, no letters touching, contrasting colors (I think she struggles a bit more with learning straight from the ones that come home). These cards are both sturdier and easier to manipulate than the small colored papers on the ring. It also allows us to play lots of games (thanks to Auntie Tee for the tip!) that I make up as I go.

One day, it may be everything laid out in a matrix and I say "Find me the word ________" or maybe I give her a small object and ask her to put that object on a specific word or maybe I just go old-school flash card style and she reads what I show her. We mix it up, I wing it, and she's enthusiastic.

Most importantly though, with new words, I start out just showing them and reading them to her. I don't expect her to perform right away. She lets me know when she's ready to read them. She always shocks me when she starts to read them along with me. That's my cue to change up the strategy.

We typically do the new words before meals and then practice in the morning if we have extra time after getting ready or while waiting at the bus stop. It doesn't take long at all. It's the games that get more involved and can take a while if we allow it to. It really depends on her mood. We always stop when she shows that she's done. It's pretty obvious when she's done.

Ok, so here are some examples of the quiz sheets that come home and get me all giddy:

You can see that the first one shows a comment that continues on the back. What it says is that whoever quizzed her wasn't sure that she got "like" correct, but she was so fluent in everything that they gave it to her.

I was at home all indignant like, "You didn't have to give her anything. She knows that!"

And that's why it's good that it was a note and I didn't get all loud with anyone over (my precious) Rainbow Words.

Anyway.

Here's the rainbow that gets colored in after a successful quiz.

I'm noticing more that articulation is becoming an issue recently. The new blue words like "he" and "she"? Ugh. And then "small"? Not really sounding like how they should. Yet?

I did send in a short note a couple of weeks ago about "the" because she says it like "fa". But it's consistent so I wanted her teacher to know (she says "Smith" like "miff"). I deliberately chose "thuh" over "thee" because sooo many other things she says sound like "thee".

What's interesting is that I was told in the last IEP meeting (eek - another one's coming up on Wednesday!) that to be considered fully successful in (this?) Kindergarten, students must know 32 sight words. And the color words aren't even required. These teachers just add them in to help children with all the color-related tasks they do in class. So I guess I can breathe a little in that regard?

She's met the minimum.

And let me tell you, I am thrilled. She's strong in an academic area!

It's not that I thought she couldn't be; I'm just glad that she is. Make sense?

For so long, I thought that my slacker ways were going to screw my kid out of learning to read. So many other, younger, children had parents that were on top of this sight word thing and they were thriving. I was envious and felt defeated before I ever got started. I thought I had missed the window. I started a couple of times, but never kept it up.

It's great for me to know that she's ready and it's working now. I can let that guilt go. I love when that happens. Because I've got a lot of guilt.

But I still probably do to do something to help divert my mind from this stuff...just a tad.

Saturday, October 20, 2012

One Down: As of about 30 minutes ago, Playette is gone for her first solo overnight with her grandparents. This is a huge help for me because I've got my 10-miler in the morning and, even though a sitter is arranged, getting out the door before dawn with one less kid does make things a tad bit easier.

One To Go: I weighed in this morning with WW. I am officially 1 lb away from my pre-pregnancy weight. Considering the kind of week I had, emotions pacified with Pop Tarts and Cookies and Cream ice cream, I am shocked. But I'll take it. And vow to make better choices. The box of Pop Tarts is empty, after all.

Think good thoughts for me, k? This race has my stomach all in knots! I haven't run this distance in two years. And I missed my last long training run due to the Littlest being ill. So. Nervous.

Friday, October 19, 2012

Every day, I start out wondering what I might possibly be able to blog about. It's no secret that thirty-one days in a row is not my standard fare. Some days, it is harder to come up with something than others.

This morning, as I ran errands all across town, I came up with ideas and scratched them off of my mental list almost as fast as they came. Does anyone really want to hear about me not sleeping? Again? Or picking up my race packet? Or having to make time to go to the consignment sale because all of Playette's long pants have turned into capris overnight?

If I was in a creative mood, maybe I could make at least one of those be somewhat interesting. But, eh. It just isn't in me today.

So, as Playette was half-watching the Winnie the Pooh movie, I finished up dishes and picked over the mail.

For those that don't know, the National Down Syndrome Congress is one of two national organizations that helps to support people with, and raise awareness of, the condition. NDSC is responsible for the annual conventions we like to attend along with thousands of other families.

There was a story in there that caught my attention. It was about a self-advocate-led session from the last convention on independent living. The two adults, a woman from a small town and a man from a large city, were interviewed and couple of their responses were so relatable to me and also gave me a boost.

One day, if that's what she wants (and maybe even if she doesn't - heh), I'd love for my daughter to get up and out and on her own. We've started teaching her skills already that I hope will carry over into adulthood, making her responsible and aware enough to manage her own household someday. If she needs support, so be it.

Mere: I live two blocks from my parents so they can come to me or I can go to them pretty easily. My mom
always checks my bank statements with me and helps me with money things. Dad helps me out with the car
and things around my apartment. I have staff a few hours a week to help me with some programs like studying to be a medication aide.

Lee: My mom and I both keep track of my checking, savings and credit card accounts; we compare our
Quicken results once a week. She helps me with my medicine that I take, medical appointments, insurance
and government forms. Dad helps me with speaking engagements and my jobs. Both of them help me with
creating and sticking to a budget. My parents’ home is six hours away, but we are together about every six
weeks and I can call or Skype if I have a problem in between visits.

=====

And, check here if you'd like to see Playette in the previous edition of the newsletter. She's on page 78.

Thursday, October 18, 2012

In the effort to get out and about and not spend another afternoon rotting on the couch and then looking up and realizing that yet another day got away from us recently, we joined some friends and went bowling.

Yup, all of us.

The adults took turns entertaining Dez, but Playette was all up in the mix.

She really enjoyed bowling. She was screaming, cheering, dancing. It was infectious. We'll have to do that more often.

Wednesday, October 17, 2012

To begin, I should probably mention who I am. My name is Kristi and I've known Crittle since we were plebes (freshmen) in college.

Fast forward a decade [she's being kind -- CS] and, well, I now call Kansas, and a small farm, home.

But, last week I hopped a plane to the east coast and fell head-first into the role of aunt to the cutest kids I know (well my sisters kids are pretty cute but they are older so that doesn't count).

What a week it's been. I've done breakfast with Playette, reading time, bath time, just hanging out and playing time. I've helped with the littlest and handsomest little boy as well. Oh, if I never see orange poo again, I'll be good to go!

My take away, Crittle is a rock star mom who needs a damn vacation! She's not
allowed to delete this line either :)
[you know I would have -- CS]

Motherhood, wow! To all you Moms out there, my hat and heart goes out to you! I have forever been amazed by my sister and this week was another period for me when I was blown away at how hard a job being a mom is and the amazing grace I get to see exhibited by great moms like Crittle. Is she perfect? Nope, but she's human and so loving and kind! As a result she's got two happy, healthy children that call her Momma. Wow! Her ability to function at all on limited sleep amazes me!

Since it is Down Syndrome Awareness Month, I wanted to do a guest post about my perspective as a friend and aunt to Playette. It's hard for me to recall the past and all of our fears. They seem so absurd in today's light. Let me tell you, they were very real back then. So be kind to yourself if you're scared...we all were.

What is it like from my perspective?... Hmm

Well, it's an amazing learning opportunity. I am constantly impressed by Playette's abilities vs her inabilities! She's so stinking smart and funny. Like any other kid, for real! She loves to read, tries to sneak in TV time when mom's not looking and on more than one occasion ratted me out for doing something to her mother!

Keep in mind, I've talked with Crittle about full classroom inclusion and Playette's new respite provider (who's amazing, btw). These are not normal topics for two old friends catching up about the challenges of having a kindergartner. Still, I welcome them. They make me much more socially aware of the challenges faced by families with a member that has a cognitive disability.

It helps me to speak up when in social groups regarding DS and be able to positively contribute instead of saying something lame or worse, rude. I can easily handle the question of “What's Playette like?”
My response: Hilarious, lovely, and so much like her Momma. If pushed, I counter with being direct. Five years ago I'd have sidestepped the questions.

So, through this journey, as one of Playette’s aunts, I am learning and growing with her. It's a wonderful process of realizing there are no set limits for any of us and the best thing we can all do is try. We have no idea what the future will hold.

But let me tell ya, seeing her dressed up and heading off to kindergarten? That's a memory I will cherish for a lifetime!!!! I love that girl!

Tuesday, October 16, 2012

I waxed philosophical about that fact for paragraph upon paragraph. And then I accidentally deleted it.

Maybe that meant those emotions, the revelations, were just for me?

Most of the time I feel like I'm writing to and for myself anyway. Which is a good thing. So maybe I needed that literal representation tonight.

It was all rambly anyway.

In a nutshell, I love my son.

I love that we had to go through hills and valleys before we met him.

I love that I eventually stopped being afraid to open up my heart as a mother again.

I love that he made us wait several times over, sweetening the moment of our meeting even more, making sure we were ready to take on all that he had to give.

I love the love I see between him and his sister.

I love that he notices no differences in her. He is in awe of her very being and she is infatuated with his.

I love watching him just...do. Even if it does create conflict in me sometimes.If I put too much credence into his accomplishments, does that take something away from his sister who was challenged by such things?
I love his two teeth. But not when they bite me.

I am mystified by the fact that he doesn't seem to be hurt when he bites himself.

I am amazed that I've spent so much of my life not knowing him, so grateful that I do now.

Sunday, October 14, 2012

I've been up for more than a day, at times extremely frightened for the health of my boy. He's so little. His fever made him feel like a fireball in my
arms. I made multiple calls, asking for help. I had a bag packed for the ER and was thisclose to going.

My thought: I've never had to do that for his sister.

I think a lot of people believe that when they say they want a "healthy" baby, that automatically means one with 46 chromosomes only.

I used to think that.

The reality is that Playette is healthy and she has 47.

That's not to say that there can't be health complications with Trisomy 21. There are. It's well-documented.

But, every person is different. People with Ds are unique from one another, yet they tend to get painted with broad strokes. Everyone doesn't walk the same path.

I wish someone had told me that in our early days instead of just bombarding us with doom-and-gloom-filled worst case scenarios.

Saturday, October 13, 2012

So, by now you know that yesterday was the wedding. The flower girl and her entourage loaded up the Futuremobile (seriously, my new car has way too many buttons and I give up) and we spent a couple of days in a new city, eating and sleeping and enjoying the camaraderie of others in a different environment and for a very special occasion.

By the time we made it to the wedding site, Playette was totally hype, bouncing off the walls, and, I feared, on the verge of a meltdown. She was so excited that she wouldn't nap, no matter how much I begged. I was petrified that she'd show her fatigue right as the ceremony began.

But, no. She did great. I was so, so proud of her, but, of course, she was even more proud of herself. I think we'll be subjected to "playing wedding" for quite some time to come.

Sorry for the crappy crop job. I didn't ask permission to post anyone else on here, so I want to be respectful. Playette was super slippery and hard to catch in photos, regardless, so I don't have much to choose from.

What's most important though is why we went.

It was necessary.

The bride used to watch Playette for us, back when we lived in VA and I was working outside of the home, trying to get more things done in a day than hours existed for. We were fortunate to have a young woman recommended to us by friends that were leaving the area, so we welcomed her into our home and the life of our little girl.

She would pick her up from school and take her to therapy. They would go to the park or stay in the house to sing and play. She even let Playette practice her mad hairdressing skillz on her own locks.

And even after this young woman moved two hours away, she would still request to come and watch Playette whenever her schedule would allow such an undertaking.

This is someone who showed compassion, patience, kindness, and all the love a parent could ever hope to exist from a caretaker to their child.

So when she asked if Playette could participate in her wedding? I wanted - needed - to make that happen.

You want to know what I saw for the first time at the reception last night?

A brother-sister dance.

I've been to plenty of weddings.

I've seen the bride-groom dance.

I've seen the father-daughter dance.

I've seen the mother-son dance.

But this was my first brother-sister.

Which brings me back to something that actually relates to Ds Awareness.

The bride's brother happens to have Ds.

I have heard for the last five years how siblings of people with Ds tend to come away with more compassion, patience, kindness, and many other desirable traits.

I need to look no further to know this much is true.

There are plenty of people who are afraid that having a child with Ds will with make other children in the family suffer.

That's not what I saw last night. I saw a bond between two adults that I wish I could say existed between me and my own sibling.

And also? I couldn't help but wonder about the connection that people with Ds have with one another. Do they immediately notice the similar features and throw each other signs so secret that those of us that lack the extra chromosome miss it altogether?

Because one of the sweetest things I saw was that one particular groomsman dancing with the flower girl. He claimed her as his "daughter." He saw something in my girl that he connected with right away.

I left there feeling like I had witnessed some of what is best about this world.